In September 2016, I was diagnosed with achalasia—a condition I had never heard of. Only one person out of between 100,000 and 200,000 people has achalasia. With a US population of about 325,000,000, you do the math. Seriously, do the math (I keep getting confused about what to divide or multiply). Chances are, I will be the only person you will ever know who has this weird condition.
I am more fortunate than most who suffer from achalasia in that my gastroenterologist zeroed in on my troubles right away (after I finally made an appointment to see him). Apparently some people suffer for up to a decade before they get an appropriate diagnosis, which given what I have experienced, I find not only bizarre, but utterly horrifying.
So what is achalasia, anyway? It’s a swallowing disorder (or if you want to get all medical, a “motility” disease). There are lots of swallowing disorders out there, but this one may be the craziest. In order to be diagnosed, you have to go through four tests. First up, the typical endoscopy. If you haven’t had an endoscopy in a while, I highly recommend one. For mine, I was given the drug that Michael Jackson took a little too often. And it was awesome! (I totally see why he got addicted.) I had the best 20-minute sleep in my life and woke up completely refreshed. You have to have an endoscopy to “get the lay of the land” and to rule out a bunch of other esophageal problems.
Next up, you have one more test to rule out “pseudo achalasia” (code word for tumors and cancer): a CT scan with a lovely dye injected throughout your system. I would have called this an uncomfortable test, but then I had Test #3, which made all other tests there are in the world seem like a warm tropical island vacation.
The Manometry Study. To explain this test, it’s helpful if you’ve seen The Matrix. Remember those mechanical worm things that set out to destroy Neo and his crew? Well, for the Manometry Study, the technician takes one of those and sticks it in your nose and down your throat, through your esophagus, into your stomach. Without sedation. How I let them do this to me, I’ll never know because I have a gag reflex that is, shall we say, sensitive. Once the tube is in place (and the technician confirms that the patient is still alive), for about an hour, you swallow little sips of water every few minutes. This test measures the muscle pressure of your esophagus as well as the pressure at the Lower Esophageal Sphincter (LES). If you have achalasia, over time, your esophagus loses its ability to squeeze food down past the LES into the stomach. The loss of this muscle squeezing is called peristalsis. My reading was at zero, which meant my esophagus muscle was shot (bummer). The test also shows the pressure at the LES, which is the little trap door that opens and closes. The idea is that the LES opens when food works its way down the esophagus and closes after the food passes through. If you have GERD (severe acid reflux), there’s a good chance that the LES doesn’t close quickly enough after the food passes through, which allows the acid from the stomach to work its way back up the esophagus. But if you have achalasia, the LES doesn’t open in the first place so the food stays in the esophagus. In the Manometry Study, high pressure at the LES indicates the LES stays shut. Yep, that was me.
After all of that, I still had to go through one more test. Just to be sure. The Barium Swallow. I might have been concerned with this test (I had heard plenty of horror stories), but, I tell you, after the Manometry Study, having a Barium Swallow was like going to a cocktail party with your best girlfriends. Even the barium drink seemed pretty festive. The radiologist conducting the test seemed concerned. After shooting the first slides and then exclaiming rather loudly “Oh, wow. Just wow!” and then quickly apologizing for the outburst, I told him I was fine and that I would also like to see these amazing slides of which he was so enamored. You could say the radiologist and I bonded: He, because he was finally seeing a live version of a condition he had only read about and me, I suppose, because I was the live specimen. What he and I saw was a stretched out esophagus, a tight-shut LES, and the barium sitting in my esophagus. That clinched it. All doctors involved agreed.
I have achalasia.
All also agreed that there was only one solution: surgery (scheduled for February 2). If the condition is not weird enough for you, then how’s this? Surgery involves making small slices in the outer wall of the esophagus, forcing the LES to stay open. This is called the Heller Myotomy Procedure. Then, in order to keep the food from just shooting back out my esophagus, the surgeon performs a Nissen Fundoplication (who comes up with these names, anyway?), a procedure that wraps my stomach in some weird position around part of my esophagus to help keep the food down to give it time to digest.
It’s not a cure. Apparently, I’ll never get the pressure back in my esophagus and I’ll always have to be careful about eating. But, I should be able to eat relatively normally after I recover from surgery.
So what have I learned from all of this craziness?
First, those of you who know me, you know how much I love food. I love to cook food, I love to look at beautiful food, I love to read cookbooks, I love to try new foods, I love the texture of food, I love to write about food, I love to talk to other foodies about food. And most of all, I love to eat food. But for the past year (at least), eating has become difficult. I do best when I stick to hot, soft foods like soup. I love soup, so it’s not like I am deprived. But, I’ll admit, even I am getting tired of soup.
Because of achalasia, I have to think before I eat. I have to eat slowly. I have to pay attention to my food. I have to be mindful about what goes into my mouth. And, I’ve come to the conclusion that there is not a single thing wrong with eating that way. So I’m thankful that achalasia has brought me to that point even though it would have been nice to get there in a slightly less painful way.
Second, I’m reminded of what a privileged life I live. I have a fantastic GI doc who suspected I had something other than acid reflux when I first met with him. In just a matter of months because of his insight, I had a definitive diagnosis and a plan for the future. As the doctor told me, this is “serious, but not life threatening.” It seems like almost every month I hear about someone who is young and healthy yet gets a cancer diagnosis. I may no longer be young, but I am certainly healthy and have remained so, even while struggling with this condition.
Third, while I would not recommend this method to anyone, because of achalasia, I have lost excess weight. But it’s weird. Even though I have an extremely healthy self-esteem, I’ve learned that I do have some body image issues. I’ve always felt like I needed to lose weight (even in 7th grade when I was growing about a quarter inch a week and could not eat enough to keep up). My BMI is way within the normal range now and when I fill out those highly (un)scientific online polls, they all say things like “it would not benefit you to lose more weight.” Still, I think I could lose a few more pounds before surgery. I have nightmares that I’ll gain weight about 30 seconds after surgery (how many pizzas would it be possible to eat in my first week of recovery, I wonder?). All told, I have more empathy now for those who need to lose weight, those who don’t need to lose weight but think they do, and those who can eat everything in sight without a care in the world.
Finally, I’m learning that life continues to be one interesting journey. And the longer we travel, the more interesting it becomes. While Easy Street might seem like a worthy goal, it’s really not. So whatever you’ve been handed, make the most of it. Trust me, it’s better than curling up into a ball or sticking your head in the sand. Victor Hugo once wrote, “Many great actions are committed in small struggles.” To be sure, compared to others, my struggles are small. But the good news is I can take my own small struggles and work toward better actions. That’s what I hope to do in 2017. And, at least occasionally, I hope to contemplate these actions while mindfully eating a luscious, crunchy crusted, piping hot pizza.
January 17, 2017 at 8:21 am
Thanks for sharing this information and it’s good to know you actually have a solution. Get well.
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January 17, 2017 at 3:14 pm
Brilliant read. Cheers for sharing.
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January 17, 2017 at 3:33 pm
You’re funny! I loved reading the post and I am sorry about your bum sphincter. You have a great attitude and that’s what matters. I hope you get better and wish you good health :))
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January 17, 2017 at 11:41 pm
Great story! I’m glad there’s at least a partial solution, and that the doctor was able to figure it out so quickly.
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January 18, 2017 at 5:16 am
Brilliantly written, after a long time came across a mindful medical story of a rare condition. Wish you fastest recovery. Thanks for sharing.
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January 18, 2017 at 6:57 pm
@CJ everything will be fine ….. Everyones blessings are with you. You seem a very excellent person with the king of positive vibes that you have……. Dont forget to share with us anything that u want to after u done with your surgery ……ok god bless!!
January 19, 2017 at 3:22 pm
Praying your surgery goes well!
January 19, 2017 at 4:43 pm
Weird. I would never do those tests. But, I don’t have Achalasia; so, I can’t say what I would do.
All the best for your surgery. And keep writing, you do it really well.
P.S. I found this, listed below your article in the feed. I thought, I should share it here-
The Greatest Soup In The World
January 20, 2017 at 12:44 am
I’m happy for you to come to know the harmony of mindful eating, but sorry that you had to become a weird medical specimen in order to find it! Wishing you a happy recovery & the best pizza ever. Good story telling, btw.
January 24, 2017 at 10:37 pm
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January 21, 2017 at 11:48 am
Your post takes me back to nearly forgotten days of a long ago surgical residency. The differential diagnosis of achalasia includes quite a few scary possibilities, so I’m glad to see that you are not walking down one of these paths. However, I suspect its not a complete comfort when staring at a fresh loaf of bread or a ripe piece of fruit. But yay for soup!
Thank you very much for sharing this post and looking forward to following your journey!
January 21, 2017 at 9:33 pm
Hi, I just wanted to say that my boyfriend has been having an issue swallowing for about a little over a year now and the symptoms you descibe fits his to the T, which is why I originally opened your bog to read this post. I thought your description of the test 1 was hilarious and I also think your outlook on life is amazing. So I just wanted to say thanks for writing this post and I hope all is well.
January 22, 2017 at 6:22 pm
I pray you’ll be okay. If you were a Nigerian, I’ll make you some delicious okra soup.
January 22, 2017 at 7:49 pm
I laughed. I am sorry for your condition and wishing you all the best for your upcoming surgery, but the topic… the writing… the amazed doctor (just waw!), I laughed. So, thank you.
January 24, 2017 at 10:36 pm
Honestly, I laughed too. What else can you do???
January 22, 2017 at 7:55 pm
I love medical mysteries and especially hearing one was solved. My adult life has been one medical mystery after another, leading to Mayo Clinic where they work together to solve such issues. Anyway, back to your swallowing- I’m sure glad you got some answers and I wish you well in your surgery. My daughter is a speech pathologist working with birth to three year old babies with swallowing issues. Ironic that our triplets were born far too soon and had to stay in the NICU and learn to suck swallow and breathe on their own. All important skills. Your attitude is wonderful and probably contagious with the people around you. I look forward to reading more of your tales. And you’re right about Propofol. I have a condition requiring regular endoscopy and that is a good little naptime.
January 24, 2017 at 10:36 pm
Medical mysteries are definitely interesting! Glad you’ve been able to get help at Mayo! Triplets??? Wow. I have twins (also born prematurely) and that was challenging enough. In those early years, I often wondered how parents of triplets handled it all. For the first several months, I felt like all I did was feed and change diapers!
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January 24, 2017 at 11:15 pm
And I know what you did not do early on. Sleep. Once you can sleep you can survive. We were fortunate to have a seven year old daughter who loved helping. She was the third lap. And set of hands.
January 23, 2017 at 1:55 pm
Good luck with your surgery. Your outlook is refreshing and inspiring.
January 24, 2017 at 8:32 am
This article is very interesting to me because I have always been interested in diffretn types of medical stories, I also love the mystery behind solving medical mysteries in moines and books.
January 24, 2017 at 7:13 pm
Good Luck with your surgery, I wish you all the very best. I’m just thinking about how strange the diagnosis was. However please do keep writing, it is very engaging!
January 24, 2017 at 10:33 pm
Thanks, Goodlife! Stay tuned!
February 12, 2017 at 11:48 am
Thank you for sharing.. I pray you’ll be OK. Good luck.. I ask a permission to share this post on my facebook.
February 13, 2017 at 12:57 pm
Thanks for your email. I am feeling much better now. Of course, it is fine to post this blog on your facebook page. Thanks being interested in the topic!
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February 15, 2017 at 4:13 am
The manometry test is one of the worst things I’ve ever experienced ever😭😭😭
February 15, 2017 at 4:14 am
Fun fact – I threw up all the lidocaine they squeezed down my nose the first time the nurse tried to get the nose hose down 😂
February 19, 2017 at 1:52 am
This is a brilliant read – I think you’ve captured the frustrations of the disease perfectly. I call my achalasia “Ralph” – we’re not always on speaking terms but we’ve learned to accept one another. I had a heller myotomy and partial wrap in July 2016 and whilst i still eat nothing like a normal person, I can eat small amounts of wet foods and the pain is far more manageable. Good luck with your achalasia journey – you seem like you have a brilliant attitude and that will be a huge help for you. Vic
March 14, 2017 at 11:35 am
What a strange and fascinating story, and commendable perspective at the end. All the best for your operation!
April 18, 2017 at 6:51 pm
Reblogged this on Obaid info.
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May 10, 2017 at 9:02 pm
My pre-Celiac diagnosis endoscopy was the best time I’ve had as an adult. My first words coming out of it: “that’s some good s$^#.” And I meant it!
May 23, 2017 at 3:27 am
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September 24, 2018 at 6:50 am
all things in moderation – keep the excesses for a special occassion
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June 12, 2020 at 10:11 pm
I enjoyed reading this! You do have to find humor in the bad things! I was diagnosed with achalasia earlier this year. I had a Heller Myotomy with partial fundoplication. That was 6 weeks ago. I am still having issues post-op but I am getting better. There are still a lot of foods that I can’t eat yet. I can only eat foods that can be cut with a fork. I too am looking forward to a piece of pizza! Hope you are living well with achalasia. That’s my goal!
June 13, 2020 at 10:54 am
Hi, Kim: Thanks for your comment. At six weeks, I still had lots of problems so don’t be discouraged. I don’t think I was eating much of anything at 6 weeks. But here is the good news. I’m now 3 years post surgery and am eating almost completely normally all the time. I still have to be very careful with lettuce (so I usually just don’t eat it) and can’t have bread too often. (So if I eat pizza, for example, I try to lay off bread related things for a couple of days.) And I find that having a cup of hot tea really helps when I can feel that I’m heading down a road of trouble. I eat slowly and make sure I’m not taking big bites. (All things we should be doing anyway, right??) I still have residual referred pain in my left shoulder, which I think is the result of some nerve damage during the surgery, but I think of it as a little reminder that achalasia is a life-long condition. The surgery helps us eat, but we still have to remember to be aware of our swallowing. It gets easier. I think of this as a way of life and I’m okay with it. Having the surgery was the best decision I ever made. I didn’t necessarily think that at 6 weeks out so don’t get discouraged. Let me know how you progress! Carol